Fighting for Care, Coping with Cost – The Added Toll of Childhood Cancer

When a child is diagnosed with a brain tumor, families are often thrown into a whirlwind of emotional and medical decisions. But what isn’t always visible is the tremendous financial burden that comes with that diagnosis. For Lacy and her 14-year-old son Sam, the cost of care has been overwhelming – especially as they’ve had to fight not just for answers, but for access.

A Vision Problem Revealed Something More

Sam’s journey began in 2024, when he started complaining of blurry vision and black spots in his left eye. At first, Lacy thought it was because he wasn’t wearing his glasses. But when things got worse, a trip to the optometrist led to an emergency MRI and the shocking discovery of a brain tumor. “They told us he had cancer and needed to be transferred immediately to Colorado Children’s Hospital,” Lacy recalls.

At the hospital, Sam underwent multiple MRIs that revealed a tumor wrapped around his optic nerve. Because removing it could leave him blind in his left eye, his neuro-ophthalmologist determined that surgery was too risky. Instead an eye surgery was performed to relieve pressure in an attempt to preserve his vision, but despite these efforts, Sam eventually lost sight in that eye. Not long after, doctors discovered a second tumor deeper in his brain. A craniotomy in January confirmed both tumors were meningiomas – typically slow-growing, but in Sam’s case, a genetic predisposition was causing them to grow more aggressively. He also learned that because of this condition, he faces a 20% chance of developing additional meningiomas in the future.

A Life-Saving Treatment Just Out of Reach

In addition to its location on the optic nerve, the initial tumor is adjacent to Sam’s endocrine system, and the risk of damaging that while he is still growing could impact everything from growth to puberty to future fertility. For this reason, it was decided the safest treatment option would be proton radiation therapy, a highly targeted radiation that reduces damage to surrounding tissue. Unfortunately, this treatment wasn’t available in Colorado, and Medicaid, Sam’s insurer, denied out-of-state coverage.

This decision forced Lacy to temporarily relocate to Phoenix, Arizona, where Sam is now receiving care at the Mayo Clinic. Living on a fixed income, she had already faced her own cancer diagnosis and treatment, which resulted in the loss of part of her leg. “We’re living out of a suitcase,” she says. “We have hotel costs, grocery expenses, and $40 Uber rides each way to the Mayo Clinic.”

Support When the Burden Felt Heaviest

The costs add up fast. And while Sam’s treatment has been generously covered by Mayo Clinic after repeated denials from Medicaid, the day-to-day expenses remain a heavy burden. That’s one of the areas where the Pediatric Brain Tumor Foundation (PBTF) has been able to help out.

PBTF provides support to families like Lacy and Sam’s through resources like Uber and Uber Eats gift cards, which help cover transportation to medical appointments and meals while away from home for treatment. “If I didn’t have that, I wouldn’t know how to get Sam to treatment, and we’d be eating a lot less healthy food,” Lacy says. “The rides alone are $40 each way during peak hours, so I can go through a $100 gift card in just two days.”

Thanks to a recent grant from Uber, PBTF can now offer even larger denominations – up to $150 per application – providing more sustainable relief to families who need consistent, ongoing support. This translates to Lacy and Sam, and others, now being able to tap into additional funds for their expenses.

Hope, Help, and Human Connection

Beyond financial help, Lacy has found comfort in PBTF’s Family Support Team. Alex, a family support manager and brain tumor survivor himself, was one of the first to reach out after a social worker at Children’s Hospital of Colorado put Lacy in touch with PBTF. “I really, really appreciate the Pediatric Brain Tumor Foundation,” Lacy says. “If I hadn’t learned about your organization, I would be a mental mess right now. The Uber cards, the Starfolio calendar (part of the Starfolio Resource Notebook), just having someone to talk to, it all helped me stay positive.” She adds, “I found hope in a very unexpected place.”

Now PBTF is connecting Lacy and Sam to additional resources, including peer and parent support groups. Sam misses school, his friends, and playing basketball, and he’s frustrated that treatment is making his hair fall out – though he’s thinking about just shaving it all off. But through PBTF, he’ll have the chance to meet other kids going through similar experiences, something Lacy hopes will help him feel less alone and more hopeful.

The unfortunate reality is that Sam’s story isn’t unique. Across the country, many children on Medicaid are denied timely access to out-of-state treatments simply because of outdated policies and an overwhelming appeals process. The Accelerating Kids’ Access to Care Act, currently before Congress, aims to change that by streamlining Medicaid enrollment for out-of-state pediatric providers. If passed, it would help countless families avoid the bureaucratic delays that almost cost Sam his treatment.

Lacy urges families not to wait, not to ignore signs, and not to hesitate to seek help. She also encourages other parents to explore every support option available. “Don’t be afraid to go outside the box. So many organizations really want to help.”

For Sam, the anticipation of returning home to rejoin his friends and get back to skateboarding and fishing keeps him going. For families like his, organizations like PBTF provide critical support in times of uncertainty. And while the Accelerating Kids’ Access to Care Act has yet to pass, its potential gives families hope that, one day, access to life-saving care won’t come with so many barriers.

Learn More or Become an Advocate

If you’d like to support families like Lacy and Sam’s or learn more about the Pediatric Brain Tumor Foundation’s family support services, including transportation and food assistance, visit curethekids.org. To learn more about the Accelerating Kids’ Access to Care Act and how you can help advocate for this critical legislation, visit tinyurl.com/AKACAupdate.